Online Program

Nothing About Them Without Them: Strategies for Including Hard-to-Reach People With Disabilities in Survey Research

*Jason Markesich, Mathematica Policy Research 
Anne Ciemnecki, Mathematica Policy Research 
Karen CyBulski, Mathematica Policy Research 

Keywords: people with disabilities, survey methods, highly mobile populations, sampling, proxies, interviewer training

Survey data are a critical source of information to support the development and management of programs and policies for people with disabilities. The methods used to collect this information can, however, exclude the very people whose input is most relevant and introduce bias into population estimates. For example, key research decisions related to the development of the sample frame; selection of individuals who will participate in the survey, including the use of proxies to respond for those who have disabilities; questionnaire design; consent procedures; technologies used to administer the interview; and interviewer training often affect the inclusion in surveys of people with disabilities. The purpose of this presentation is to highlight some of the major roadblocks to survey participation for people with disabilities in each of the aforementioned areas, and to recommend some best practices for overcoming these roadblocks. For those who are designing surveys, this presentation will provide a road map of the methodological considerations needed to expand the inclusion of people with disabilities in surveys and to identify steps in the research process where vigilance could reduce total survey error.